What Am I Missing?

If you are the parent or guardian of a child with special needs, the public school system can be a tough one to navigate.  One minute you feel like you're finally on the right path and the next you realize how far you have to go.  Our family's ride has been a rollercoaster to say the least.  This journey has opened our eyes to the cracks within the system and fueled the desire to expose them in order to create a more productive, appropriate, and pleasant educational experience for children with special needs.

As an educator with a degree in special education and a mom of children with special needs, I am completely baffled by the inconsistency and lack of transparency I have encountered on both sides of the table.  It has always been a mystery as to why it is such a challenge for people to listen to one another and devise a plan that is individualized...truly individualized, for a child with special needs.  It is called an IEP team for a reason:  to ensure a child's needs are appropriately met after thoughtful consideration of data, classroom observations, parental input, and suggestions from specialists.

I'd venture to say it is common knowledge no two children are alike, so why does it seem like the ultimate goal of our educational system is to corral children in the quintessential box?  The desired outcome of this system seems to be one where children do what they are told, when they are told, how they are told, and, in the end, demonstrate their knowledge on a standardized test.  Let me be clear I do not find the teachers at fault for this, but rather a broken educational system which appears to have been created by people with little to no knowledge or understanding of basic childhood development.

In my opinion, this era where test scores seem to drive what is taught and time is spent ensuring the most amount of children meet those standards leaves two populations significantly underserved:  children who are significantly above the curve and those who learn in a less traditional way.  Ironically, many of these children are twice exceptional:  they are gifted, but have a disability.      

This is the category in which my children fall.  When it became apparent the majority of the IEP team was unwilling to acknowledge our younger son's very obvious "hidden disabilities" (some examples may include:  Dysgraphia, Dyscalculia, Auditory Processing Disorder, Sensory Processing Disorder, Dyslexia, Social Communication Disorder, ADHD, Anxiety, OCD...the list goes on) due to his performance on evaluations and wanted to attribute everything that occurred to "behavioral challenges" we knew it was time for a new plan.  A crucial component of his education was being overlooked:  the struggle to perform in the classroom.  The emotional toll it was taking on him and us was too much to bear anymore.  After serious and thoughtful consideration, we finally made the decision to withdraw him in November to homeschool.

As time passed and grade level demands have increased, we've discovered our older two children also have some learning challenges.  When we brought this to the attention of the school staff, we were once again met with resistance.  After all, their test scores read "proficient" and their work seemed acceptable by their standards.  If you were to look closely, though, you would spot their challenges and realize how dramatically they impact everyday learning.  After considering whether to dig in and go to battle again or just take a reprieve for awhile, we opted for the latter.  

Three weeks later, the stress level in our household has decreased tenfold.  I have been able to work with my kids and make accommodations for their challenges.  I can see how they were able to slide by in a classroom of kids, but working with them one-on-one has been really eye-opening.  I suppose there is a reason why they're called "hidden disabilities."  If you looked at my two older children, their scores, and behavior, you'd likely come to the conclusion they are "typical."  

What you may not know, though, is writing is the ultimate challenge.  It elicits pain in our oldest son causing him to not be able to fully express himself in written assignments.  It has caused great frustration for him, because he cannot keep up with the writing and fully express his thoughts.  He writes very slowly and has an unusual and uncomfortable grip when using a writing utensil.  He is not being lazy and doesn't lack the skills...he simply cannot write anymore.  This is Dysgraphia.  Coupled with OCD tendencies it can be crippling.  Now imagine having points deducted from your tests and assignments because your answers weren't thorough enough, as no one realized you had more to say and knew the answers, but you just couldn't write anymore.  It's demoralizing.  This is especially true for our son, the "rule follower," who strives to do his best and not rock the boat.   

Our oldest daughter cannot remember basic math facts.  She is in third grade and counts on her fingers for basic addition and subtraction.  Her class has moved on to multiplication and division and while she can do the problems, they take a significant amount of time to complete.  When she has to write the answer to the problem, you can tack on even more time.  She, too, has OCD tendencies and erases her numbers until they are just right.  At home she screams out loud when it doesn't look perfect.  I asked what she did when this occurred at school and she said, "I would just scream in my head."  

While both of their standardized test scores put them in the above-average to advanced range in nearly every subject, they have learning disabilities that impede their everyday functioning and ability in the classroom.  It turns out, standardized tests that require filling in a bubble or are computerized don't reflect a writing disability.  Prior to their withdrawal, our kids were performing in the classroom at a proficient level, but not up to their innate potential.  To us, that is unacceptable.  How many children are in classrooms all over America meeting standards, yet have the potential to achieve so much more?  

This leads me to a significantly vulnerable population who are terribly misunderstood:  children whose challenges have not been identified who, in turn, become so frustrated undesirable behaviors emerge.  Improper identification of behaviorally challenged students is one of the gravest mistakes I feel educational professionals make.  As Ross W. Greene states in his book Lost at School:  Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them, "When is challenging behavior most likely to occur?  When the demands placed on a kid exceed his capacity to respond adaptively."

The ultimate place to start with a child who struggles with their behavior at school is to assess their skills.  The first question parents and educational professionals should ask themselves is, "What am I missing?"

Why is this child behaving this way?  Are they bored?  Do they lack a skillset to complete this task?  Is this environment overwhelming their sensory system?  Are they unable to organize their thoughts and get started on this project?  Did they understand the instructions?

It is imperative to look for a pattern.  When does this behavior occur?  Are there specific tasks that set this off?  Is it a time when they may be hungry?  Have they been sitting for awhile?  Start with the obvious and move out from there.  Do not simply assume the child is (lazy, defiant, refusing to work, etc.), instead, work to get to the root cause of the behavior. 

Can you imagine how disheartening and hurtful it must be to be misunderstood day in and day out by those who have been charged to teach you, care for you, and guide you through this critical period of time in your life?  While it may be frustrating for the adult, put the shoe on the other foot and consider the perspective of the child.   

It is important to remember every child is capable of learning.  For some, it may be easy and straightforward and others it may require putting together an extremely difficult puzzle before it is possible to tap into their true potential.  If we could shift our thought process to, "What am I missing?" rather than assuming the worst in a child, can you imagine the difference it could make?  How many children out there are identified as behaviorally challenged when there may be an underlying learning challenge everyone has missed?  

We owe it to our children to believe in them and advocate for the proper identification of their needs.  A modified environment, accommodations for learning challenges, and less rigid, meaningful learning may be the needed combination many of our children need to instill a love of learning and an eagerness to explore.  A classroom environment that cultivates creativity, celebrates individuality, and destroys "the box" once and for all, could lead to producing a generation of children who thrive in the classroom and feel confident and ready to take on the world. 

Change is possible.  A grass roots effort is necessary.  It will take time, a tremendous amount of work, and the willingness to have the courage to speak up at school board meetings, state legislative sessions, and continuous communication with our elected officials in D.C., but it is possible.  Anything is possible.

Time will tell, but I'm feeling pretty optimistic.